Movement Disorder in CRPS: Not Typical Dystonia... But What Is It?

It's on my mind again, what I've become accustomed to name "CRPS Dystonia."  It's rearing its incredibly ugly head again -- in my case, we theorize, in conjunction to a worsening of the infection in my bones.  It's just a theory, and like many theories, was devised to give us a gracious way out to a difficult conversation.

It's the standard reaction of an entrenched medical establishment to accord psychogenic causalities to that which lacks sufficiently convincing research to support another explanation.

I believe that it says a lot that I could give a royal crap whether anyone thinks my sustained, severe, hours-long sessions spent twitching and spasming, all to the tune of some very fine moaning and intermittent screams, is a psychological problem or the result of some CNS misfiring.  If a psychiatrist can find a way to stop them, all praise psychiatry!  If my neurologist manages to do something beyond shake his pretty, pretty head, and give me a painful hug, all hail that sweet guy, too!  Mostly, though, it is me, my MDVIP go-to-guy medico, and the poor slob assigned my case over at the Pain Management Dood's Place -- It's the three of us against the world of CRPS dystonia, or, as the kids say, "what-ev-er."

The fact that baclofen tends to work, if one is able to take the dose needed, is one huge argument for CNS involvement, but, hey!  Don't let decades of clinical practice hammered and honed into an unofficial "Best Practices" sway you.

Seriously, don't.

While those of us dealing with it must also deal with managing symptoms based on the blank areas of a road map, we also want the pure research to continue.  The problem seems to be the necessity of basing the scientific inquiries on what is known to those who study movement disorder.  And these disorders are weird enough to witness that one of the first things medicos want to weed out are those infamous "fakers." 

It's the Turdish Ochoa effect!

Finally, researchers are getting down to the infamous brass tacks.  Some basic understanding about weird and obsessive guarding, weird and excessive non-use has helped.  That leaves the rest of us with eyes rolling up into our skulls and one leg lost in space, while the other is making pretzels.

Here is the most recent study I've found, from the May 2013 issue of Clinical Neurophysiology.

Clinical Neurophysiology is the official journal of the International Federation of Clinical Neurophysiology, the Brazilian Society of Clinical Neurophysiology, the Czech Society of Clinical Neurophysiology, the Italian Clinical Neurophysiology Society and the International Society of Intraoperative Neurophysiology.The journal is dedicated to fostering research and disseminating information on all aspects of both normal and abnormal functioning of the nervous system. The key aim of the publication is to disseminate scholarly reports on the pathophysiology underlying diseases of the central and peripheral nervous system of human patients. Clinical trials that use neurophysiological measures to document change are encouraged, as are manuscripts reporting data on integrated neuroimaging of central nervous function including, but not limited to, functional MRI, MEG, EEG, PET and other neuroimaging modalities.

The Journal has special emphases on epilepsy and on studies of cognitive function and cognitive disorders. Motor neurone and neuromuscular diseases, vestibular disorders, motor control and somatosensory physiopathology are also covered by the Journal. Studies on animals and technical notes must have clear relevance and applicability to human disease, and studies reporting normative data for specific tests must have clear novelty. Case Reports are not generally accepted as full length submissions but may be considered as peer-reviewed Letters.

Note, please, that the article concentrates on hand postures.  I recall rolling down the hall at the orthopedic clinic where I was having a follow-up visit after reconstruction of my right elbow.  I was holding my arm in the way that caused the least amount of pain (the skin felt on fire, yadda yadda), which amounted to a sharp bend at that very elbow, with the entire arm, though, held tucked and away from potential accidental touch or jostling.  My surgeon was walking down the hall toward me and called out, "Why are you holding your arm like that?" The simple question made me aware that I was doing something that looked strange, and also made clear (to me) why I was doing it -- to avoid pain.  

I made a conscious effort to NOT hold my arm in that manner while in that doctor's presence, and then noted, on the drive home, that I'd reverted to the less painful pose.  Nutty, huh?

This is a photo of one of Dr. Anthony Kirkpatrick's patients, Ana English.  First, I so understand her

apparent mood.  Second, the signs of CRPS just leap off the page.  Third, I believe she is doing wonderfully well now following his ketamine protocol.  But yes, that is exactly the posture I had also adopted, and to which my surgeon responded so negatively.  But when it is you and your painful limb against the world?  You find the "posture" that protects you best. 

From Kirkpatrick's Clinical Practice Guidelines

I happen to be just that simple a thinker -- that "posturing" is something related purely to the attraction of positions that cause the least pain.  A nonscientific statement, which I'd make even more embarrassing by requesting a greater emphasis put on first quantifying the variables that are assessable during spasm/tics/dystonia movement disorder manifestations.  I can be such a bitch.

Electromyography can be pretty painful for CRPS patients but I hope they keep recruiting willing subjects, because that gives impressive information about what muscles/nerves are up to, and how.

Interestingly enough, I've had two divergent doctor-types make the same very self-assured statement:  "It's a sign of insufficient pain control." I couldn't get them to ruminate further, as they'd only reassert the belief and did not spout supporting research.  Again, they were going with their decades of "best clinical practice." 

Clin Neurophysiol. 2013 May 18. pii: S1388-2457(13)00310-6. doi: 10.1016/j.clinph.2013.03.029. [Epub ahead of print]

Deficient muscle activation in patients with Complex Regional Pain Syndrome and abnormal hand postures: An electromyographic evaluation.

Bank PJ, Peper CL, Marinus J, Beek PJ, van Hilten JJ.

Source

Department of Neurology, Leiden University Medical Center, Leiden, The Netherlands; Research Institute MOVE, Faculty of Human Movement Sciences, VU University Amsterdam, The Netherlands.

Abstract

OBJECTIVE:

Motor abnormalities in Complex Regional Pain Syndrome (CRPS) are common and often characterized by a restricted active range of motion (AROM) and an increased resistance to passive movements, whereby the affected body part preferably adopts an abnormal posture. The objective of the present study was to obtain a better understanding of the factors that are associated with these abnormal postures and limitations of the AROM, and to investigate whether these motor impairments reflect dystonia.

METHODS:

We evaluated characteristics of surface EMG of the flexor carpi radialis and extensor carpi radialis muscles during active maintenance of various flexion-extension postures of the wrist of the affected and unaffected side in 15 chronic CRPS patients, and in 15 healthy controls.

RESULTS:

Deviant joint postures in chronic CRPS - at least in those patients with some range of active movement - were not characterized by sustained muscle contractions, and limitations of the AROM were not attributable to excessive co-contraction. Rather, the agonistic muscle and its antagonist were activated in normal proportions, albeit over a limited range.

CONCLUSIONS:

The AROM limitations and abnormal postures that are often observed in chronic CRPS patients are not associated with excessive muscle activity and hence do not exhibit the characteristics typical of dystonia.

SIGNIFICANCE:

We hypothesize that structural alterations in skeletal muscle tissue and pain-induced adaptations of motor function may contribute to the observed motor impairments. Our findings may have important clinical implications, since commonly prescribed treatments are aimed at reducing excessive muscle contraction.

Copyright © 2013 International Federation of Clinical Neurophysiology. Published by Elsevier Ireland Ltd. All rights reserved.

PMID:

 

23692976

 

[PubMed - as supplied by publisher]

Other articles that may elucidate the matter further:

Stretch reflex responses in Complex Regional Pain Syndrome-related dystonia are not characterized 
by hyperreflexia.

Antagonist motor responses correlate with kinesthetic illusions induced by tendon vibration.

Thalamic single neuron activity in patients with dystonia: dystonia-related activity and somatic 
sensory reorganization.

[A case of post-hemiplegic painful dystonia following thalamic infarction with good response to botulinus toxin].

Functional anatomy of thalamus and basal ganglia.

Corey Dutina Of Pura Vida Bracelets Is A Good Egg

I'm a visual person, which makes my declining eyesight a bitch of a situation.  But mostly it's for finer stuff, like the details of a television show -- and when was the last time the details of a television show or a movie really made that much of a difference?  It's this online stuff that is getting difficult.

Well, this is ONE post that is not a woe-is-me.  Do you remember that old post, written in the middle of a long ago ManorFest, when Tête de Hergé suffered from a heat wave from Hell?  And our fridge and freezers died?  With all the beastial flesh for ManorFest at risk?  Oy, what a crisis!

We turned to the Queen of the Universe at Sears Customer Service, and then to her supervisor, for help.  Help, alas, was not easy to obtain due to... well, a host of dirty word concepts, the typical ones having to do with Customer Assistance. It was like a Carl Reiner and Mel Brooks' comedy routine, scripted back in the days of the "2000 Year Old Man."  At least on our end, there was a lot of laughter, as we were beyond tired and facing a night of roasting, and pit watching, and wild abandonment of mandatory kitchen safety measures, with half the population of the territory at risk.  Praise the Lord for On Site Universal Health Care Coverage & Catering.

Hey, take a moment and enjoy Reiner and Brooks again.  This is the stuff that makes me laugh.  I just hooted my way through three paragraphs, and hooting is where it's at... Then I will regale you with the tale of a true Customer Service Employee, my hero, Corey Dutina.

 Mel Brooks: The 2000 Year Old Man -- uploaded to YouTube byRogerBsDelaine

Let's see. My opening, irrefutable assertion was my essential visual orientation.  That extends beyond entertainment, believe it or not.

Okay, I'm sentimental.  Looking, simply looking at a meaningful something can save a moment teetering between disaster and absolutely fine.  Touchstones for the eye.

Add to that a tactile element, if possible, and it's a reminder to center, a centering focus, that goes with you everywhere.  That's right -- hand and arm wear.  Rings.  Bracelets.  It is difficult, with CRPS, to wear any ring, any bracelet, but I consider them Physical Therapy, like doing the dishes and the laundry, and giving Dobby the beloved belly rub.

Of course, I've fallen in love with Pura Vida Bracelets.  I've owned my own versions of their pricey textiles for years, and making them is probably pretty easy... but well, when I'm depressed, I spend money.  Just last night I ordered a new shower chair to replace the one with the screw that has been ripping a hole into my right haunch for months.  I'm snappy.  Taking care of business.  And so on.  This time, I got a stool that... swivels!  My back shall have equal time.

Right.  Bracelets!

First I purchased the lovely Deep Impact Pack,
shown on the right.  The colors.  The imagined sheen.  The sale price plus 20% off.







But what I had long wanted was the NEGU Charity Pack.
And it has been perpetually out of stock.  So I

put it on my Wish List -- who actually uses Wish Lists?  Then, suddenly, it wasn't a question of wanting it, it was a question of needing it.  Near the nadir (one can never be sure) of my depression, I was trying to keep good thoughts for Brayden and Ashley, and their families, as well as even more potent meditations for my darling Fred, for TW, for Grader Boob, for my mother and her blessèd relatives (myself, TW, and Grader Boob, excepted).  And I knew I was losing my own fight, weird as a fight to stop fighting can be, as a fight!

NEGU used to make me snicker in derision.

Never
Ever
Give
Up

If you had decided to give up, wouldn't the concept of NEGU, a creation to honor the mantra of a 12 year old girl dead of a brain tumor, of course, reduce you to snickers of derision?

Probably not.

I decided I needed the damn bracelet.  Mostly as a reminder of dignity, and humor, and all of the other saving graces.  Beauty.  Silence.  Mother Earth.  My responsibilities.  That stuff.

But they were never in stock, these loops of blue and white and black, a reminder to rub against my burning skin, something to focus on when I can no longer make out the details of my miniature Rothkos -- and don't even START with me about Rothko, details, and the sizing of the stuff.

So when I was applying my discount for the very available Deep Impact bracelet, I asked about how the heck to get a NEGU charity pack.  And got an unexpected reply:

Hello Retired Educator!
I could make a NEGU pack for you if you want to order it!
Let me know :) 
Corey Dutina, The Problem Solver

And from that point on, poor Corey discovered that I attract bad luck as readily as cat hair.  We went through me not trusting him, we went through my credit card being declined, which encouraged me to not trust Corey, and then, I dunno, NEGU won out... and I woke up this morning to another missive from The Problem Solver:

I will make one available on the site. Let me know when you are ready to purchase because I am only going to put one online for you!

Well, that killed my distrust, and as soon as I signed on, up popped old Corey Dutina in my lower right hand corner, asking if he might be of assistance.  Sure as tootin', the side reported no NEGU bracelets were available, but within seconds, up popped a grand total of ONE available.  I snatched it up, as much as one can when computer shopping, and thanked Corey profusely.

It's in the mail.  

So, pay attention Pura Vida Bracelets -- your employee Corey Dutina, The Problem Solver, went above and beyond the dull patina of normal customer service and onto a higher plane of shining bright platinum.  He did well.  He's a good egg.  Give him a raise, or something else that he might want.  I mean, a strange woman, who doesn't explain herself, just wrote to say she needed, more than wanted, one of your bracelets, and he made it happen, overnight.  

I am going to give up, I really already have.  But I don't have to do it painfully, for myself or for anyone else. In fact, it is required of me to strive for the opposite -- for joy, laughter, silliness.  

I'm just struggling because I've never learned to be honest, emotionally.  With all I've "learned" about centering, about sitting with what I feel, I still am driven to inflict it -- upon myself, upon others, especially those most trying to help.  Upon you.  A cruel writer to her readers, that's not helpful.  If I ever have an idea worth noting, why should you trust me?

Today was better.  Very high pain, but I tried to react differently, as in not reacting.  I took my meds, and curled up with it.  Watched fuzzy television.  Adored Dobby and Buddy, who are, it looks like, either extremely close animal buddies, or fervent feline gay boys.  They comfort each other, which is great, but Buddy, in his exuberance, keeps injuring the older, wiser Dobby -- a very small animal.  We had to goop his eye last night, and in typical Dobby fashion, he forgave us, purring and delivering head rubs with glee within the next five minutes.  His eye is still red, but the other scars he's obtained from love's blossoming are healing.

I got a bit of work done, not much, but enough to feel less like a slimy slug.  The area formerly known as the left shoulder is hot and throbbing, clearly all a-bubble with that detestable character, the gross Frank Pus. The right hip is in competition.  I'm gonna win a medal, or a ribbon, or something.

Every moment is a new start.  I may not get anywhere, but I'll NEGU my way along.

Ah... good news.  If we can swing it, I'm going to get to meet Maranda, Brayden's Mom, and hopefully, Brayden and Mason, too. Maybe next Wednesday, as fate would have us seeking medical succor at the same time in the same area.  Ah, fate!  The latest news on Brayden is that as his broken leg heals, they'll start him on some new, stronger chemo meds.  They are still scouting out possibilities for him, but he's in uncharted territory.  If you think about it, in a NEGU frame of mind, uncharted territory is a place of limitless potential.


 Jessie Rees Foundation.-- NEGU and her JoyJars

On March 3, 2011 eleven year old Jessica Joy Rees was diagnosed with an inoperable and incurable brain tumor called DIPG.  That same month Jessie started her treatment consisting of 30 rounds of radiation and daily chemotherapy at Children’s Hospital Orange County. It was also during this time she asked her parents, “How can we help them?”.She was referring to all of the other kids fighting cancer.Jessie had a burden for her peers and decided to do something about it.  She also wanted to encourage them to with her little motto “NEGU“, which stands for “Never Ever Give Up.” This simple little thought has become “Jessie’s Wish“.Jessie dreamed of the day that her little motto would become an inspiring message of hope to every child and family.Ten months and two days later, Jessie lost her fight on January 5, 2012. On that day she also left behind a global movement of compassion that her foundation continues with the support of amazing corporations, athletes, charities, volunteers and people like you!

If you skipped the Reiner/Brooks videos up above?  That was stupid.  Go back and watch 'em.

TED Talk -- Judy MacDonald Johnston: Prepare for a good end of life

Judy MacDonald Johnston is the Publisher and Cofounder of Blue Lake Children's Publishing, which develops educational reading tools for preschoolers through a program called the Tessy and Tab Reading Club. Johnston's credo, "love words early," and her focus on the earliest years of life, is an interesting foil for her other passion: Planning for end of life. Johnston's side project, Good [End of] Life, deals not with happy babies decoding symbols, but with a much more morbid topic: Death. Good [End of] Life is a set of online worksheets and practices that aim to help deal with difficult questions -- like who should speak for you if you cannot speak, and whether to fill out a do-not-resuscitate form -- before it's too late. 

In the past 15 years alone Johnston has founded two other companies in addition to Blue Lake Children's Publishing: PrintPaks, a children's software company, and Kibu, a social networking site for teenage girls. Previously Johnston was a Worldwide Project Marketing Manager at Hewlett Packard.

Want to go directly to the worksheets?  Click HERE.

Chinese Dissident Ai Weiwei Recalls Political Detainment in New Song

'Dumbass' was inspired by the artist's 2011 imprisonment

Chinese sculptor, installation artist and political dissident Ai Weiwei has released the first song off his planned heavy metal album. Like the rest of the album, "Dumbass" takes inspiration from and has roots in Ai's secret government detainment for 81 days in 2011. The accompanying video takes a direct interpretation, depicting Ai in prison, enduring torture, having his head and beard shaved by his son and wearing lipstick and a dress. Meanwhile, the disorienting track sways and swings with growling guitars and Ai's uncompromising vocals in Chinese.

"There was one thing I thought was interesting. When I was detained, there was a paramilitary officer standing there very seriously watching me, and he asked me quietly if I could sing a song," Ai told Reuters on discovering music while detained. "At the time I felt extremely frustrated, because I felt terrible, and I realized that in a situation like that, these guards felt just like me, they wanted to hear songs."

"It doesn't sound very good, because I don't have any real skill. . . . And I found that in making music, I have a lot of difficulties," Ai said. "But I am trying very hard, and I will keep doing it, and I have hope to become someone who sings comparatively well."

Although Ai was previously detained for criticizing the government, he said he doesn't fear retaliation for the album, though he doubts it will be sold in China. "My songs will certainly be blocked. Not just my songs, but my photograph and my name are all blocked. But there's no problem," he said.

Ai plans to release the full album, Divina Commedia, next month. He's also started work on his next album, which he says will be a collection of love songs.  READ MORE HERE

-- By RJ CUBARRUBIA MAY 22, 2013 1:20 PM

Rolling Stone

****************************************************************

Ai Weiwei - Dumbass (Explicit)

 Ai Weiwei

YouTube: Published on May 21, 2013

Music video for Dumbass by Ai Weiwei. Song by Ai Weiwei with music by Zuoxiao Zuzhou. Cinematography by Christopher Doyle. © 2013 Ai Weiwei.
From the forthcoming album, The Divine Comedy, everywhere June 22, 2013.
Download Single + Video: http://aiweiwei.com/music/dumbass

Dumbass (Explicit Lyrics)

When you're ready to strike, he mumbles about non-violence. 

When you pinch his ear, he says it's no cure for diarrhea. 

You say you're a mother-fucker, he claims he's invincible. 

You say you're a mother-fucker, he claims he's invincible.

Fuck forgiveness, tolerance be damned, to hell with manners, the low-life's invincible.

Fuck forgiveness, tolerance be damned, to hell with manners, the low-life's invincible.

Oh dumbass, oh such dumbass! Oh dumbass, oh such dumbass!

Oh dumbass, oh such dumbass! Oh dumbass, oh such dumbass!

Lalalalala, lalalalala Lalalalala, lalalalala

Lalalalala, lalalalala Lalalalala, lalalalala

Stand on the frontline like a dumbass, in a country that puts out like a hooker.

The field's full of fuckers, dumbasses are everywhere.

The field's full of fuckers, dumbasses are everywhere.

Fuck forgiveness, tolerance be damned, to hell with manners, the low-life's invincible.

You say you're a mother-fucker, he claims he's invincible. 

You say you're a mother-fucker, he claims he's invincible.

The field is full of fuckers, dumbasses are everywhere.

The field's full of fuckers, dumbasses are everywhere.

傻伯夷

当你要出击，他嘟囔非暴力，

你拧他的耳朵，他说这样不治拉稀。

你说你马勒隔壁，他说他天下无敌。

你说你马勒隔壁，他说他天下无敌。

宽恕你大爷，容忍你妈逼，

素质你妹耶，至贱则无敌。

宽恕你大爷，容忍你妈逼，

素质你妹耶，至贱则无敌。

傻伯夷啊傻伯夷，傻伯夷啊傻伯夷，

傻伯夷啊傻伯夷，傻伯夷啊傻伯夷， 

啦啦啦啦啦，啦啦啦啦啦。啦啦啦啦啦，啦啦啦啦啦。

啦啦啦啦啦，啦啦啦啦啦。啦啦啦啦啦，啦啦啦啦啦。

像一个傻逼一样站出来，国家就是一只鸡啊

菊花开遍原野，哪哪儿都是傻逼。

菊花开遍原野，哪哪儿啊都是傻逼。

宽恕你大爷，容忍你妈逼，

素质你妹耶，至贱则无敌。

你说你马勒隔壁，他说他天下无敌。

你说你马勒隔壁，他说他天下无敌。

菊花开遍原野，哪哪儿都是傻逼。

菊花开遍原野，哪哪儿啊都是傻逼。

Old Business: Sweeping Stephen J D'Amato, MD FACEP Out With the Rest of the Trash

One last CALMARE/"Scrambler Therapy"/CTTC post, with my apologies.

I forgot about Dr. Stephen J. D'Amato.  In part because he cleverly disguises his involvement by changing the spelling of CALMARE.  He does not peddle the crap known as CALMARE, no sir!  His business is CALMARx.

I tire of these straw men, but imagine being newly diagnosed with CRPS.  Remember how you went from the beginning of the internet to the internet's fabled end in search of something, anything?  Perhaps you were being strung along by Worker's Compensation, a system soiled by the turds of Dr. Jose Ochoa and his years of accreted testimony, only unraveled over the past three or four years into the malicious, money-grubbing nonsense that it is and was.  Perhaps you lived in a region devoid of experts in the fields of neurology and pain management, the two fields best equipped to recognize and appropriately treat CRPS.  Today, there's much outreach to those likely to first see a developing CRPS case -- emergency room physicians and orthopedic surgeons (those brave enough to not fear litigation, those brave enough to diagnose and refer, an act more likely to engender eternal gratitude than a lawsuit).  Much of that is due to the steady and reliable work of RSDSA, Jim Broatch and his team.

Anyway.

It's sufficient to look at Dr. D'Amato's understanding of CRPS to know that he knows little to nothing about the disorder:

Complex Regional Pain Syndrome is generally broken down into three stages:
Stage one: During stage one the patient may experience burning pain, muscle spasms, stiffening of the joints, rapid hair or nail growth near the site of the injury. There is also the possibility of vasospasm which causes skin discoloration and fluctuating skin temperatures.
Stage two: During stage two the patient will likely endure even more intense pain at the injury site, the swelling may spread, hair and nails growth may cease, the joints will begin to thicken making them less mobile, and loss of bone density will worsen.
Stage three: With progression into stage three the pain will become unyielding, and most of the damage done to the skin and bones may be irreversible if untreated. The limb's mobility will become severely limited, and the muscles that help flex the joints will spasm. In some cases the limb may develop contracture and loss of function along with constant very painful skin even to slight touch ( allodynia)

Great job at copying from some old text, some out of date online source... but this is one of the greatest myths and greatest wastes of time, the promulgation of the "stage" theory.  CRPS does not "break down" or neatly follow a path into any "stage" production.  There are still people -- intelligent people -- with CRPS who bemoan their "stage three" status, and many who have gone on to invent the dread "stage four." Don't ask, you really don't want to know.

Stage three one week, Stage one the next... that is the reality.  What is seen as a progression of symptoms is really just the perversion of CRPS, chameleon wannabe.  The "stage" explanation has been discredited for so long that I'm amazed to continue to see it so frequently.

Maybe it responds well to a newly diagnosed patient's need for some order to return to their understanding.

Maybe it's the easiest thing for a doctor to spout, not knowing what s/he really ought to convey in terms of information.  Maybe it's all that doctor knows.

D'Amato has more creativity than just that required to putz around with the CALMARE name -- he is also an inventor of myth.  But Snake-Oilers also cannot help but rely on the snake oil scientific standard of... THE TESTIMONIAL.  Right under his neat -- but erroneous -- categorization of CRPS as a disease of stages, comes this:

Who Commonly Suffers From Complex Regional Pain Syndrome 

CRPS can strike at any age, however the average age at diagnosis is 42 and is 3 times more frequent in females than males. There are also studies which theorize that certain people may be genetically predisposed to developing CRPS after a significant or minor injury. Aside from predisposition studies show that statistically it is possible to associate smoking with CRPS. One study in particular showed 68% of patients were smokers as opposed to 37% in the hospitalized controls.  

Our CRPS treatment at CALMARx PAIN RELIEF utilizes a unique method of electro-therapy and provides "incredible" results. View the testimonials below from our patients and their experiences.

None of his assertions are referenced to pertinent research.  The smoking information is fascinating, as is the hilarious mention of the "37% in the hospitalized controls." There are investigations ongoing into genetic predisposition, but even if a genetic predisposition exists, science is years away from confirming it, or identifying gene abnormalities or sequences that may lead to real treatments or preventive measures.  Some believe that there is a predisposition among  Ehlers Danlos syndrome (EDS) patients to develop CRPS, though it may also come down to something as simple as an increased tendency to injury, and how those injuries are or are not treated. The grand total of subjects upon which this baby-stage genetic theory was based?  Four.  Japanese researchers posit that patients who are members of families with "first degree history of family headache" are genetically pre-disposed to CRPS.  That gave me a headache, just reading the leaps and triple spins involved in the theorizing.  Here's the abstract, and may it have led to further funding and other types of ka-ching ka-ching for the involved:

We investigated whether headache and family history of headache are risk factors for complex regional pain syndrome (CRPS) or not. Twenty-three CRPS patients and 69 healthy persons were interviewed whether or not they suffered from headache and had first-degree family history of headache. A headache sufferer was defined as a person who regularly suffered from headache for more than 2 days per month. Headache after an occurrence of CRPS (headache after an injury or operation in case of CRPS after an injury or operation) was excluded and just headache before an occurrence of CRPS was included. If a first-degree family had a regular headache, she or he was regarded as a headache sufferer regardless of the frequency of headache. Of the 23 patients with CRPS, 12 (52.2%) had suffered from headache before an occurrence of CRPS. Of the 69 healthy persons, 18 (26.1%) suffered from headache. Significant differences between patients and healthy persons were found. Of the 23 patients with CRPS, eight (34.8%) had a first-degree family history of headache. Of the 69 healthy persons, ten (14.5%) had a first-degree family history of headache. Significant differences between patients and healthy persons were found in a family history. The results suggest that headache and a first-degree family history of headache are risk factors for CRPS. To determine whether or not headache and first-degree family history of headache are risk factors for CRPS, further prospective studies with larger patient numbers should be carried out.

Elucidating the bias of questioning, translating that solid science to genetic research, or to whatever constitutes the science of predisposition (statistical analysis, I suppose, based on patient accounts), may lead to earthshattering... what?  Talk about an urgent need to settle on a diagnostic protocol...  Well, if it interests you, $39.95 will get you all the titillating details.

The same researchers who authored the "first-degree family history of headache" also came up with the theory that "Herpes Simplex Virus Type 1...Chlamydia Trachomatis, Borrelia Burgdorferi, Mycobacterium Tuberculosis, human Herpes Virus type 6, and Circulatory Disturbances" may be root causes of CRPS, concluding that "virus infection theory is an attractive hypothesis that accounts for many enigmas of CRPS."

Stanton-Hicks is reported via a fellow blogger to have investigated a case in which identical twins developed CRPS... but I am, right now, unable to find the source of that reference.  And he's currently on The List -- just because of his love of gadgetry and intrathecal administration of drugs, the SCS, etcetera.  All in all, though, he's one of the trustworthy, dedicated, and more brilliant researchers in the field.  I'll forgive him his love of gadgetry as soon as CTTC is pulled from the trading floor.

Back to the Turd in question, Dr. D'Amato. I forgot to mention that he's been brave enough to wow the suffering CRPS patient with another synonym for the crap-science he's practicing -- "MC-5A technology," yes, just another synonym for CALMARE (or CALMARx, for the dyslexic) and "Scrambler Therapy."  But it sounds impressive, no?

He refers those seeking even more convincing of his CALMAR machine with many knobs via the titillating testimonial world of cutting-edge science to his YouTube channel, where, once again, CALMARE is pointedly misspelled as the title of his channel:   Calmar Pain Relief

Here is Nancy, who described a pattern of CRPS spread that I've certainly never heard of and that kind of defies the general layout of the nervous system (sympathetic or otherwise).  I am just so glad that she did not have her "spine filleted," as that would truly have been... weird.

I can tell you that people with CRPS -- and those blessed to have recovered -- could never have this lightness of tone, this unbearable lightness of being, or that hair color when referencing even the *memory* of their pain.

If you cannot see through this unsubstantiated bull crap, money-grubbing, soul-sucking exploitation of people living with severe chronic, never-relenting pain, get the hell off of my blog.  And QUICK, go put your life savings into this hot stock tip:  CTTC.

For shame, Dr. Stephen J. D'Amato, for shame.

Demographic and medical parameters in the development of CRPS type 1

I'm pointing to another freely available article with great content, but, as is often the case, I've an ulterior motive.

The Rosetta Stone

It surely is as important to learn to predict and thereby, hopefully, learn to prevent the development of CRPS -- of whatever type.  In order to conduct this study, which reviewed almost 600 fracture patients, the authors were cognizant of the changes in the wind regarding diagnosis criteria and included results using "Harden and Bruehl criteria..., the International Association for the Study of Pain criteria, and... the criteria of Veldman."

For some helpful before-reading reading on the three criteria, give THIS a quick read first.

It's as close as we can get to seeing the three at work side by side, and it's provocative.

Here is the abstract, and I encourage you to read the whole thing (just click on the title):



Demographic and medical parameters in the development of complex regional
pain syndrome type 1 (CRPS1): Prospective study on 596 patients with a fracture

Annemerle Beerthuizena,⇑
Dirk L. Stronks b
Adriaan van’t Spijker a
Ameeta Yakshb
Barbara M. Hanraets b
Jan Kleinc
Frank J.P.M. Huygenb

a Department of Medical Psychology and Psychotherapy, Erasmus MC, Rotterdam, The Netherlands
b Department of Anesthesiology and Pain Management, Erasmus MC, Rotterdam, The Netherlands
c Institute of Health Policy and Management, Erasmus University Rotterdam, Rotterdam, The Netherlands



ABSTRACT

Limited data are available on the incidence of complex regional pain syndrome type 1 (CRPS1) and on
demographic and medical risk factors for the development of CRPS1. The objective of this study was to
investigate the incidence of CRPS1 in patients with a fracture using 3 sets of diagnostic criteria and to
evaluate the association between demographic/medical factors and the development of CRPS1 diagnosed
with the Harden and Bruehl criteria. A prospective multicenter cohort study of 596 patients (ages
18 years and older) with a single fracture of the wrist, scaphoid, ankle, or metatarsal V, recruited patients
from the emergency rooms of 3 Dutch hospitals. Of the 596 participants, 42 (7.0%) were diagnosed with
CRPS1 according to the Harden and Bruehl criteria, 289 (48.5%) according to the International Association
for the Study of Pain criteria, and 127 (21.3%) according to the criteria of Veldman. 
An analysis of the medical and demographic differences revealed that patients in whom CRPS1 later developed more often had intra-articular fractures, fracture dislocations, rheumatoid arthritis, or musculoskeletal comorbidities. An ankle fracture, dislocation, and an intra-articular fracture contributed significantly to the prediction of the development of CRPS1. No CRPS1 patients were symptom free at 12 months (T3). At baseline, patients with CRPS1 had significantly more pain than patients without CRPS1 (P < .001). The incidence of the diagnosis of CRPS1 after a single fracture depends to a large extent on the diagnostic criteria used. After a fracture, 7% of the patients developed CRPS1 and none of the patients were free of symptoms at 1-year follow-up.

My Normal: Am I There Yet?

I'm trying like crazy to return to "my normal."  

Garderobe, Peveril Castle, Derbyshire

This is a term now in my daily lexicon -- it used to be set apart.  (In that there field, yonder, a little farther, a little farther, more to your left -- LEFT, I said -- yep!  Right there!  Good job, Dear Reader!)  It used to be confined to exam rooms.  "So, would you say you're close to 'your normal'?" might be an insightful question for Dr. Shoulderman to ask after giving me a prosthesis, taking away a prosthesis, putting in a spacer, taking out a spacer, or removing the shoulder joint altogether.


The only intelligent answer is a one-sided shrug and a heart-felt muttered: "I guess so." Or just omit the shrug.  We never wanted to hurt Dr. Shoulderman's feelings.

It's that time that comes every three years or so.  My private long term insurance company that pays me 60% of my pay, post retraction of any bit of money due any agency (even my union dues!) at the level of pay I was receiving in the year 2000.  The following year, of course, was when Fred had to stop working because "someone" had to be here to call 911 in case I didn't feel like it. [Ha?]

I'm pretty sure they surveilled us and I bet that was a grand old time for some poor soul.

Anyway, now it's pretty much as my go-to-guy MDVIP doctor promised me it would be:  "No one, ever, is going to question your need for disability coverage.  This is permanent, this is not going to get better."

He actually does have a sense of humor, this devout man.  I've heard him laugh, even inappropriately (the true test of mental health).  I've seen him hold his head in his hands more, though.  And since he and his partner left their huge group practice to go off and practice excellence, he's felt free to say he'd pray for me.

One of his best jokes yet?  I said, "I hope you had a good Passover." He responded, "Did you go to an Easter sunrise service?"

I about died laughing.

So first thing I do wrong this time -- and I'm back to talking about getting re-certified as a bona fide gimpette -- was not notifying the disability insurance company that my phone number had changed.  Oopsies. (I'm channeling Rick Perry.)  So when my "case coordinator" attempted to call, and got the old "disconnected" message, her natural assumption was that I'd grown new arms, legs, bones, and a better brain and had run off to Mexico, living high on Mexican hogs via that aforementioned 60% bounty.  Plus the extra pesos brought in by selling my mail-order drugs.

That's right. I -- me -- moi -- am a cartel.

I knew I was up to something!

Anyway, this is always a time of stress, in spite of my humor-possessing but humor-skewed beloved doctor's assurances that I am "totally and permanently disabled." This is always the juncture when the neighbors might have mailed the company that tell-all video of Fred and me waltzing on the veranda, or me jogging off to teach my early morning yoga class at the community center eight miles down the road.

Hey!  Did I tell you that I have new whatchamacallits?  Elbow crutches, you know, with the cuff the fits on your arm?  Two of 'em!  One for each side, and yes, that part is tricky.  The goal is to be able to stand for three minutes (still don't get how anyone chose "three" as a goal) which I absolutely CANNOT do -- BUT I can walk around for almost that long!  Maybe half that long!  So long as I am within crash reach of the bed or wheelchair!  It's actually pretty cool, even if annoying know-it-all people around me keep changing the various length settings on the suckers.  Fred has never been man enough to accept that I am way-y-y taller than he is.  Way-y-y.

So the forms are here for me to fill out.  I keep moving them around.  I doubt I'll be able to write legibly.  Maybe I can type out the answers, print them, and attach that to the original document?  Or do they want to see me scribble?

On the phone -- we did "connect" -- Gladys, or whatever her name was, seemed thrilled that I still had the same doctor as three years ago, as six years ago, as nine years ago.  "That makes it easier!" she crowed.
I had to pause as a vivid image of the man, his head gently knocking against the doorframe, overwhelmed me.

Like Fred, he had told me he was "overwhelmed."

Neither of them know it, but both of those moments were... sea change.  Pearls, eyes.  But it doesn't read that way, seem that way, exist that way, for Gladys.

I'm still having gastrointestinal bleeds on an ongoing basis, particularly when I don't follow the strict instructions not to take the drugs which help my bone pain the most.  I am doing so less and less, until the next time I cannot use my legs due to pain, cannot straighten them, and definitely cannot stand on them.
Here's something funny.  You know how people lose socks?  That great eternal mystery?  I lost the ankle brace that was making my right ankle fracture bearable.  No, I am NOT kidding.  And I always thought the punchline was that socks had PAIRS.  I only have the one sweet, little brace -- it has no sibling.  My theory?  It's here.  Somewhere.  Yes, that qualifies as a theory.  What do you want?  There was a thief in the night (swam the icky algae-afflicted-as-never-before moat, jumped into Marlinspike Hall via a well-used garderobe -- eww! -- bypassed the small golden museum quality pieces scattered about and took, instead, my damn ankle brace?  Here's the blatant flaw in your version, bud -- I am not sleeping, not since the return of the suicide-inducing spaz attacks.  Even the cats are staying away.  And since I've started guessing at how much insulin I might be needing, I've been in a jolly blood sugar roller coaster kind of mood.  A bit of advice for you:  don't take insulin, then half eat half a salad.  You might be unlucky enough to fall asleep.  I -- being forced awake -- simply transformed into Hulkette, snarling and green.  Fred did the bright thing and ran to get the jalapeño, red pepper-flaked with Thai chili sauce brown rice to shove down my throat... running right past the left over holiday peppermint candy.

What I dislike most about episodes of the sort?  I get paranoid afterward.  Fred must hate me.  The Domestic Staff seems distant.  Bianca has a sudden extra shift at the bar (the opera was among the first and hardest hit by Tête de Hergé's plunge into forced sequestration -- damn this proclivity for copying the politics of governing exhibited by failed and dying systems!).  Buddy came, but decided I'd be best comforted if he deposited his Maine Coon ass right where my shoulder used to be.  Buddy left shortly thereafter, as in:  Buddy fled.

I dunno.  Am I back to "my normal" or not?

What?  You afraid I'll bite your freaking head off if you try and answer?

"I am not done with my changes."*

for the last few years i saw  

Outdoor Nation

the hat more than
you:
floppy, white, omni-
present.

no, not you floppy!
but yeah, white, though
more truly chesnut brown
like folks might pay
to have a tahoe
house blend
in.

you're always at the end
of the world, a stance
that is not defiant
like i thought,
but ready,
like i (already)
knew,
and stiff legged
well,
maybe, yes,
defiant: like i (already)
knew.

how i wish for the names
of every plant between
you
and the camera
lens, and loved
them as
you
do the earth
and all that dwells
therein, plus
the plant's
names.

i wish
you
could kiss
the lips of every
god-crier, heaven's-coming
love-offering believer.
i wish
you
could slip them
sweet nectar from the end
of the honeysuckle's
string hid inside
the petals,
you.

*I have walked 

through many lives,

some of them my own,

and I am not who I was,

though some principle 

of being abides,

from which I struggle 

not to stray.

When I look behind,

as I am compelled to look 

before I can gather strength 

to proceed on my journey,

I see the milestones 

dwindling toward the horizon 

and the slow fires trailing 

from the abandoned campsites, 

over which the scavenger angels 

wheel on heavy wings.

Oh, I have made myself 

a tribe out of 

my true affections,

and my tribe is scattered!

How shall the heart 

be reconciled 

to its feast of losses?

In a rising wind,

the manic dust of my friends,

those who fell along the way,

bitterly stings my face.

Yet I turn.

I turn,

exulting somewhat,

with my will intact 

to go wherever I need to go,

and every stone on the road 

precious to me.

In my darkest night,

when the moon was covered 

and I roamed 

through the wreckage,

a nimbus-clouded voice 

directed me:

Live in the layers, 

not on the litter.

Though I lack the art 

to decipher it,

no doubt the next chapter 

in my book of transformations 

is already written.

I am not done with my changes.

--Stanley Kunitz

CTTC closed at... $0.201

Competitive Technologies, Inc (CTTC)

$ 0.201 ▼ -0.1187 (-37.13%)

Volume: 147,847

The enemy of my enemy is my friend, isn't that how that macho nonsense goes?  You'd likely not believe me, given the recent tenor of my blog, you know, what with continuing to carry the Turd Banner, waving it o'er the head of Dr. Jose Ochoa, money-grubbing soul-sucker of CRPS pain sufferers, patron of the insurance arts.  Oh, and CALMARE, "Scramber therapy," and CTTC?

You didn't really think that was upsetting me in any conceivable way, did you?  Did I forget to mention that I hold nearly all the remaining shares of CTTC, that I'm taking over, mwa ha ha!

That was a very bad joke.  Captain Haddock has told me to knock it off, via miniature submarine communiqué -- a technology that CTTC might well look into in its next incarnation.  Think of the applications!  Surely some slightly modified TENS unit -- maybe with 6 extra nano-channels, knobs painted red -- can channel wormhole radar communication capable of cutting through 8 feet of foul moat algae into a cure for CRPS pain?  Oh, and hemorrhoids, and their inherent discomfort.

I am stealing one last post from InvestorsHub CTTC message board, which, I assume, shall be heaving that respiratory pattern known to scientists as Cheyne–Stokes, those dying gasps.  I'm posting this to reassure everyone that CALMARE/"Scrambler therapy," and CTTC never had your or anyone else's pain relief in mind.

Remember what makes the world go round?

My motivation? Just something to do when the trading day gets boring.
However, I admit to finding company's entire death spiral quite interesting.
I mean, four years ago, Nano -- for who knows what reasons -- apparently decided to ditch CTTC's previous business model in order to start selling an alleged "miracle" painkilling machine from Italy.
Now, it's not clear to me whether Nano actually planned to sell the thing or whether he simply planned on using it to sell CTTC stock.
If they actually planned on selling it, then it certainly seems clear CTTC didn't research the device or do any sort of survey of potential demand for it.
Given that the original business "plan" was to never maintain an inventory but to simply ship the devices from GEOMC as they were ordered, and that there was never any effort to write a "guarantee" for the device, or to establish any sort of "service" for customers in the event the device broke down, it really doesn't look like they were actually looking to build a REAL business.
My own thought is that the plan was similar to that pursued with the "MC Squared" -- do a lot of promotion in order to attract buyers for the stock and then just abandon the device.
This notion is supported by Nano hiring his relative to set up the phoney "Innovative Medical Therapies" company so CTT could issue a press release announcing a phoney 10 million dollar order.
From there, things get murky. Maybe they began to believe their own press releases and actually thought they had a real product since they enlisted people to open clinics and do research.
Perhaps things just got out of hand after patients failed to appear and none of the multitude of anticipated clinics announced in press releases ever opened and third party reimbursers thumbed their noses at them.
In any case, here it is four years later and all they have to show for their efforts is a room filled with "miracle" pain killing machines that they can't seem to give away.
And the deal with Blackridge and the failure to file their 10K -- a MAJOR black mark on any company -- suggests that they have reached that stage where they are little more than a trading vehicle for penny stock jobbers. 

I think that about says it all.  Bye-bye CTTC,. Bye-bye CALMARE, Bye-bye "Scrambler Therapy"!  Good luck reinventing yourself, Dr. Cooney (Michael J. -- chiropractor) ,  Dr. Robert Chalmers.(Ob/Gyn), and all the rest of you financially inept, pain-inducing, soul-sucking turds.

One thing is for sure, Giuseppe Marineo is laughing all the way to the bank, where he is probably now best known as an underwater supersonic wormhole expert.  Captain Haddock, via SubSkype, just laughed and said, "I've got you're back, you CRPSer, you!" As he signed off, I heard him yell something about "fresh bait."

No wonder Bianca Castafiore loves him so...

good boy, good boy

Series of Case Studies Invite Further Investigation of TNF-α in CRPS

TNF-alpha

Good Morning, Dear and Faithful Readers,

After the tragic intrusion of the recent dying gasps of CALMARE/"Scrambler" into our usual CRPS research fun here at elle est belle la seine la seine elle est belle (which some idjit over at the CTTC investment message board called... hold on to your berets... an ITALIAN blog), I've had the urge to see what's new over at PubMed.

I don't need to repeat what I've often repeated to you, if you're one of my CRPS brethren or sistren, that you must do your own due diligence, that you must separate wheat from chaff (and determine whether it's the chaff or the wheat that's of value!), and that you should consult with legitimate experts in the field, though they be few and hard to find.  There, no need for repeating what is simple common sense, even to people who may not have slept longer than 90 minutes at a stretch in, oh, a decade -- or whose pain levels would reduce CALMARE investors into absolute idjitness, such that we'd likely have to lock them in an isolated tower somewhere (maybe Italy?) so that they won't disturb the rest of us as we go about the business of living.

Just a reminder that TNF-alpha research is being driven by some solid basic science done as far back as 2001, with the publication of "The important role of neuropeptides in complex regional pain syndrome" as well as the seminal 2005 publication, in the journal PAIN, of  "Changes in cerebrospinal fluid levels of pro-inflammatory cytokines in CRPS," that included Dr. Robert Schwartzman as a researcher.  It concludes: "These results are consistent with studies that suggest that the pathogenesis of CRPS is due in part to central neuroimmune activation."  "These results" refer to demonstration via ELISA assay of "elevated pro-inflammatory cytokines," one of which is, of course,TNF-α.  It is all part and parcel of the major drive in [legitimate] research that follows the multifactorial role of neurogenic inflammation.

So, while keeping in mind that this is "just" a "case series," it does participate in a distinguished lineage.

***********************************************

Anti tumor Necrosis Factor - Alpha Adalimumab for Complex Regional Pain Syndrome Type 1 (CRPS-I): A Case Series.

Eisenberg E, Sandler I, Treister R, Suzan E, Haddad M.

Source

The Rappaport Faculty of Medicine, Technion, Israel Institute of Technology, Haifa, Israel; Institute of Pain Medicine, Rambam Health Care Campus, Haifa, Israel.

Abstract

BACKGROUND AND AIMS:

Evidence suggests tumor necrosis factor-alpha (TNF-α) mediates, at least in part, symptoms and signs in complex regional pain syndrome (CRPS). Here, we present a case series of patients with CRPS type 1, in whom the response to the anti-TNF-α adalimumab was assessed.

METHODS:

Ten patients with CRPS type 1 were recruited. Assessments were performed before treatment, at 1 week, and 1, 3, and 6 months following 3 biweekly subcutaneous injections (40 mg/0.8 mL) adalimumab (Humira^® ) and included the followings: Pain intensity using a 0-10 cm visual analog scale; the Short Form of the McGill Pain Questionnaire; the Beck Depression Inventory; the SF-36 questionnaire and mechanical and thermal thresholds (Von frey hair and Thermal Sensory Analyzer, respectively). In addition to the description of individual patient responses, both intention to treat (ITT) and per-protocol (PP) analyses were performed for the entire group.

RESULTS:

Three subgroups of patients were identified (3 patients in each): "nonresponders", "partial responders", and "robust responders" in whom improvement in almost all parameters was noted. Both the ITT and PP analyses demonstrated only a trend toward improvement in mechanical pain thresholds following treatment (ITT χ² = 13.83, P = 0.008; PP χ² = 10.29, P = 0.036).

CONCLUSION:

These results suggest adalimumab, and possibly other anti-TNF-α, can be potentially useful in some (although not in all) patients with CRPS type 1. These preliminary results along with the growing body of evidence which points to the involvement of TNF-α in the pathogenesis ofCRPS justify further studies in this area.

Pain Pract. 2013 May 13. doi: 10.1111/papr.12070. [Epub ahead of print]

Free Article from "The Journal of Pain Research": Palmitoylethanolamide and Topical Ketamine Cream

Dearest Readers, you know how the words "free" and "CRPS research" are as enticing to me as cataria nepeta to the felines!  Nonetheless, the usual caveats are in force.  This is not a research study but a case report.  Still, as I recently reminded everyone, the entire impetus behind studying ketamine in relationship to CRPS came about as a result of observations made in a single case study, so I withhold judgment.  This is something that I suppose could be tried with the assistance of a willing and experienced neurologist or pain management specialist and a compounding pharmacist.  Those of us who cannot tolerate creams due to severe allodynia look forward to hearing from those of you still able to slather the stuff on!


Treatment of chronic regional pain syndrome type 1 with palmitoylethanolamide and topical ketamine cream: modulation of nonneuronal cells.

Jan M Keppel Hesselink1 and David J Kopsky2

1Institute for Neuropathic Pain, Bosch en Duin, The Netherlands;

2Institute for Neuropathic Pain, Amsterdam, The Netherlands

Correspondence: Jan M Keppel Hesselink, Institute for Neuropathic Pain, Spoorlaan 2a, 3735 Bosch en Duin, The Netherlands, Tel +31 30 6910932, Email jan@neuropathie.nu

ABSTRACT

Chronic regional pain syndrome (CRPS) can be intractable to treat and patients sometimes suffer for many years. Therefore, new treatment strategies are needed to alleviate symptoms in CRPS patients. This case report describes a patient suffering from intractable CRPS type 1 for 13 years. Due to her swollen painful feet and left knee she is wheelchair-bound. The combination of palmitoylethanolamide and ketamine 10% cream reduced her pain by more than 50% after 1 month of treatment, and a marked reduction in swelling and skin discoloration was noticed. Furthermore, she could walk independently again and she experienced no side effects. Thus, palmitoylethanolamide and topical ketamine could be a combination therapy option for treating CRPS patients.

KEYWORDS:

CRPS, cream, endocannabinoid, ketamine, mast cells, palmitoylethanolamide, sudeck

PMID: 23658493 [PubMed] PMCID: PMC3643547

Before/After Photos: